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X-ORIGINAL-URL:https://cystinosis.org
X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART:20230101T000000
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DTSTART;VALUE=DATE:20240229
DTEND;VALUE=DATE:20240301
DTSTAMP:20260411T044506
CREATED:20230919T145420Z
LAST-MODIFIED:20240208T215903Z
UID:4546-1709164800-1709251199@cystinosis.org
SUMMARY:Rare Disease Day 2024
DESCRIPTION:By taking part in Rare Disease Day you help provide a greater understanding and acceptance of cystinosis and living with a rare disease. You may even find speaking out about cystinosis empowering. Either way\, we thank you for being a part of our community and considering taking part in this important day. Here are a few examples of how to get involved: \n\nShare your story with the official Rare Disease Day sponosors here\nSign up for Rare Disease Week on Capitol Hill in Washington\, DC. Virtual sessions are also available\nTalk with a friend\, teacher or loved one about living with a rare disease. Resource materials can be found here including presentations for younger children\nGet social; post something personal or leverage the Rare Disease Day Toolkit downloads to raise awareness\nJoin the Rare Action Network\, Light Up for Rare or Show Your Stripes Campaigns lead by the National Organization for Rare Disorders (NORD)\nShow support – for yourself or a loved one. The CRN provides special programming and assistance year-round. Discover what is available at no cost to you here\nParticipate in research. Check the Research tab for open studies including an online Quality of Life study currently looking for U.S. volunteers\n\n 
URL:https://cystinosis.org/event/rare-disease-day-2024/
CATEGORIES:Fundraising Events
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